Corlanor (ivabradine) for POTS: Does it Really Work?

Corlanor (U.S. brand name) or ivabradine (chemical name) is a new heart rate medication used for heart failure. It works by targeting a specific channel in your heart that determines your heart rate.

One 2.5 mg salmon-colored tablet

Why is Ivabradine Used Off-Label for People with Dysautonomia?

Because of its ability to lower heart rate without lowering blood pressure, like beta blockers or calcium channel blockers do, it has also been used for patients with IST or inappropriate sinus tachycardia. In other words, people who have a very fast heart rate, even at rest and when asleep.

IST is a form of dysautonomia, a group of syndromes that occur when the autonomic nervous system decides to go rogue on the body. Symptoms of dysautonomia usually include heart rate problems, digestion dysregulation, abnormal sweating, and blood pressure fluctuations.

Naturally, success with ivabradine for patients with IST has sparked interest in the POTS, or postural orthostatic tachycardia syndrome, community. POTS, unlike IST, is usually characterized by a high heart rate only when standing.

Since ivabradine is contraindicated for individuals with a resting heart rate lower than 70 BPM, it can be quite tricky to take if you have a resting heart rate of 60 BPM with POTS, for example, but you also have a standing heart rate of 120+ BPM.

Although ivabradine may not be possible for individuals with low resting heart rates, it can be a powerful medication for many individuals struggling with POTS. Because many people with POTS struggle with low blood pressure, having a medication that lowers your overall heart rate without affecting blood pressure is, for some people, a miracle drug.

How I Started Ivabradine for POTS

In April 2017 I was diagnosed with POTS after flying back from India with a strange illness no one could figure out. Many cardiologists in New Delhi thought it was just a bad case of SVT (a heart arrhythmia) and wanted to do a cardiac ablation. Other cardiologists thought I had both IST and SVT, which would explain the high heart rates.

Because my body pumped so full of adrenaline throughout this period, my resting heart rate was elevated, making IST seem… possible, but it still did not make complete sense since my heart rate would drop to 75-80 BPM when laying.

I had tried metoprolol and developed breathing problems and rashes on it, so it was soon discontinued. They then offered ivabradine, which I decided not to try because it was so hard to get in the U.S. (By the way, ivabradine costs PENNIES in India).
After flying back home I ended up in the ER with another bad SVT and tried diltiazem, which had absolutely no effect on my heart rate. We then tried propranolol, which I had another allergic reaction to and discontinued after the first dose.

I was then offered atenolol, to which I said, are you crazy? I’m pretty sure my body hates beta blockers at this point.

Finally, we came to the decision that I would treat my POTS without medication and through exercise, hydration, salt, and compression alone and I was discharged. Having a 100+ BPM difference sitting to standing was scary, but I made it work.

About a year later I had a major POTS flare and was going from 65 BPM laying to 180+ BPM standing in a matter of seconds. I had to crawl to the bathroom and I thought, what about ivabradine?

Ivabradine was never offered to me in the U.S. but I decided to investigate it as a possibility with my cardiologist. My resting heart rate when my body is not full of adrenaline is about 65-70 BPM, so I wasn’t sure if I would be a good candidate.

We agreed to try it a few months before my February flare, but my body typically hates all medications and I was too afraid to try. My mom had Stevens Johnsons Syndrome when I was younger, so naturally, trying a newly approved medication by the FDA is quite terrifying.

I had run out of almost every other heart rate lowering medication to try and I knew this was one of my last options. I tried ⅛ of a 5mg pill to start and from that dose alone, I saw relief.

My body is so sensitive to medication that the tiny slivers I tried brought my standing heart rate down from 180+ BPM to 130 BPM. I was amazed, but I was also terrified. What would have happened if I started on the 5mg twice a day dose?

My body is strange in that it also responds to ivabradine differently. It takes about 3-4 hours for ivabradine to start working for me, but it also works for about 12-18 hours. These effective half-lives are much shorter for most people on ivabradine.

My Experience with Ivabradine

I have now been on ivabradine for six months and it is amazing what this potent miracle drug can do for you. I take 2.5mg a day and it usually keeps my standing heart rate under 105 BPM. If I flare up, I take up to 5mg a day. I have had zero side effects so far, which is probably due to the small dose that I am on. I can still feel like trash with a lower heart rate and ivabradine doesn’t prevent those symptoms.

Sometimes, it does lower my resting heart rate below 60 BPM, which for me, feels awful. Having low blood pressure without a higher heart rate to compensate because of medication is what I believe makes me feel symptomatic at lower rates. So I eat some jelly beans to raise the heart rate and down a bottle with TRIORAL to raise my blood pressure.

The biggest downfall of ivabradine is that it has absolutely no effect on adrenaline and heart rate increases due to anxiety and panic attacks. If I am anxious or I am having constant adrenaline dumps, I will still have a resting heart rate near 100 BPM. I can’t take more ivabradine for those moments, because as soon as the stressful moment is over, my heart rate will then fall too low from the excess medication.

Ivabradine doesn’t work like beta blockers do against adrenaline, so it is no surprise that adrenaline dumps still occur. However, it is interesting that the adrenaline seems to make the medication ineffective for me.

I can be sitting on my couch watching a movie and have my heart rate be 65 BPM then go out and sit in my car to drive and suddenly it is 95 BPM. There is no doubt that my adrenaline is very potent on my heart.

Many people complain about the floaters and visual disturbances they have on ivabradine. I have only experienced it once at the gym with the bright lights. However, I think that it is a dose-dependent side effect, so I am less likely to experience it because of my low dose.

The only major problem I have with ivabradine is the price. With insurance, it costs about $90 for 60 5mg pills. Because of my low dose, it ends up being affordable enough. However, if my insurance weren’t to cover it, I know it can cost some people up to $1000/month until they reach their deductible on insurance.

This ridiculous cost is why many people on ivabradine mail order it to the U.S. from Canada.

Ivabradine also interacts with MANY MANY drugs. If you have problems with QT prolongation, taking ivabradine may not be an option for you and if it is, you may have to avoid other QT-prolonging drugs. Most drugs you may take for POTS can have this effect.

I have a lot of anxiety about the QT prolongation effects, but ivabradine is really the only medication other than Xyzal (which does not have this effect), so I’m not too concerned about polypharmy negative effects.

All in all, I wish I tried ivabradine when it was offered to me in India!

My Final Take on Ivabradine

Ivabradine can be a very potent and effective drug to lower heart rates in the absence of adrenaline or anxiety.

Ivabradine can be obnoxiously expensive but can be mail ordered in from other countries for more reasonable costs.

Ivabradine generally cannot be taken with low resting heart rates, which can be problematic for some people with POTS.

If your main complaint with POTS is the high heart rate, ivabradine can be an amazing drug.

If you have major problems with low blood pressure, ivabradine could be a good option for you.

If you use an Epi-Pen or have diabetes and beta blockers are not options for you, ivabradine could be a good alternative.

As with anything concerned medication or supplements, be sure to talk with your doctor about ivabradine before taking it. Ivabradine is generally prescribed by a cardiologist or an electrocardiologist and may require EKGs to monitor your heart before and after starting treatment. Some people start ivabradine under medical observation. Also be sure to call your insurance about coverage before discussing it with your doctor.

I am not a physician and cannot give you advice about dosage or ivabradine treatment, but this is an article to share my experience with ivabradine as a possible option to discuss with your provider.

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It’s Dysautonomia Awareness month!
coolncreative.wordpress.com/2018/09/30/five-facts-about-dysautonomia/
coolncreative.wordpress.com/2017/10/24/how-you-can-support-people-living-with-dysautonomia-and-help-raise-awareness/
I haven’t tried thsi drug yet but I’ve heard it actually works by inhibiting the SA nodes (pacemaker cells) so can result in bradycardia.

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What is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of autonomic dysfunction. In other words, the part of your nervous system that controls all involuntary functions (breathing, digestion, heart rate, etc) has decided to rebel and you are now in a civil war with your body.

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